CDE Catalog | NINDS Common Data Elements

***Please contact NINDS CDE team (NINDSCDE@emmes.com) in case you encounter any search difficulties.***

The CDE Catalog is a directory of the available NINDS CDEs. Users can search the Catalog to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, etc.), and to view and download details about the CDEs.

Select any filter below to search the CDE Catalog.

For best results, clear form between searches. In addition, when specifying NeuroRehab, Sport Related Concussion or Traumatic Brain Injury as the Disease, please select a Sub-Disease as well.

NeuroRehab Comprehensive includes all CDE recommendations.

NeuroRehab General includes all CDE recommendations that are not disease specific.

All other NeuroRehab Sub-Diseases include recommendations specific to existing NINDS CDE project disorders.

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CRF Name

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Operations

Selected 25 rows in this page.

The search results below can be downloaded by clicking the checkboxes on the far left side of the table. Select the header checkbox to select all CDEs listed on the first page. Then choose CDE Detailed Report from the Choose an operation dropdown menu.
CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Sub Disease Name
C19632	Weight pediatric unit of measure	Unit of measure for the pediatric weight numerical value	Supplemental	Pregnancy	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C16060	Weight delivery mother unit of measure	Units for the measurement of the participant's/subject's weight at the time she gave birth	Supplemental	Pregnancy	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C16059	Weight delivery mother measurement	Measurement of participant's/subject's weight at the time she gave birth	Supplemental	Pregnancy	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C12783	Variant mutational analysis results available indicator	Whether the variant or mutational analysis results are available on this participant/ subject	Supplemental	Mutation Analysis	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C12944	Variant mutational analysis performed indicator	Whether the variant or mutational analysis was performed on the participant/subject	Supplemental	Mutation Analysis	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C12784	Variant mutational analysis performed family member indicator	Whether the mutational analysis was performed on a family member	Supplemental	Mutation Analysis	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C17896	Variant mutational analysis not performed reason	Why the mutational analysis was not performed	Supplemental	Mutation Analysis	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C12306	Ulna length measurement	The length of the ulna of the participant/subject	Supplemental	Pulmonary Function Testing	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C18834	Ulna length measure tool other text	The free-text field related to 'Ulna length measure tool name' specifying other text. Instrument used to measure ulna length	Supplemental-Highly Recommended	Pulmonary Function Testing	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C12307	Ulna length measure tool name	Instrument used to measure ulna length	Supplemental-Highly Recommended	Pulmonary Function Testing	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C10171	Trial number	The number representing the sequence for any repeated measure test or assessment when it is performed multiple times	Supplemental-Highly Recommended	Pulmonary Function Testing	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C10171	Trial number	The number representing the sequence for any repeated measure test or assessment when it is performed multiple times	Supplemental	Hand Held Dynamometry	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C10171	Trial number	The number representing the sequence for any repeated measure test or assessment when it is performed multiple times	Supplemental	Grip Strength	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C17999	Tocolytic agents required during preterm specification text	Text specifying the tocolytic agents the participant/subject required during preterm labor	Supplemental	Pregnancy	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C16048	Tocolytic agents required during preterm labor indicator	Indicator of whether medications used to suppress premature labor were required during preterm labor	Supplemental	Pregnancy	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C18242	Symptoms first appeared age value	Value of the age at which the participant/subject first noted a neuromuscular symptom	Supplemental	Medical History	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C08006	Symptoms first appear date and time	Date (and time if applicable and known) the symptoms for the disease or disorder first appeared as confirmed by the participant's/subject's medical history obtained by a physician	Supplemental	Medical History	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C18243	Symptom first appear age type	Type of age of the participant/subject at first symptom appearance	Supplemental	Medical History	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C19520	Subject affected indicator	Indicator for the subject's being affected	Supplemental	Medical History	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C01700	Specimen accession number	Number with which the specimen taken for the tests being reported was accessioned to the record storage facility	Supplemental	Laboratory Tests and Tracking	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C19735	Sleep Periodic Limb Movement index value	Value, in movements per hour of total sleep time, of the Periodic Limb Movement index of repetitive and stereotyped limb movements during sleep	Supplemental	Polysomnography	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C18751	Sex participant or subject genotype other text	The free-text field related to 'Sex participant or subject genotype type' specifying other text. The difference between male and female, based upon the interactions between genes and between the genotype and the environment. Genotype is identified based on the individual's reproductive organs and functions assigned by chromosomal complement	Supplemental	Demographics	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C17396	Sex genotype type	The difference between male and female, based upon the interactions between genes and between the genotype and the environment. Genotype is identified based on the individual's reproductive organs and functions assigned by chromosomal complement	Supplemental	Demographics	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C12390	Respiratory ventilation mode synchronized intermittent mandatory ventilation pressure support type	Type of synchronized intermittent mandatory ventilation (SIMV) with pressure support ventilation used	Supplemental	Respiratory Interventions	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy
C12388	Respiratory ventilation mode bi-level positive pressure type	Type of bi-level positive pressure ventilation used by the support ventilation device	Supplemental	Respiratory Interventions	False	Facioscapulohumeral Muscular Dystrophy	Facioscapulohumeral Muscular Dystrophy

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The NINDS CDE Team does not post proprietary instruments/scales recommended by the CDE Working Groups on this website. This includes, but is not limited to, copyrighted or trademarked instruments/scales. Information about recommended instruments can be found in the Notice of Copyright (NOC) documents under ‘CRF Module/Guideline’ on each disorder’s data standards page. For any questions regarding these instruments/scales please contact the corresponding owner/author. The NINDS CDE Team is not responsible for the availability or content of these external sites, nor does the NINDS CDE Team endorse, warrant or guarantee the products, services or information described or offered at these other internet sites.